Author: Deborah Cavanagh

Excitement filled the day of my birth. I was the first grandchild on my father’s side and the first granddaughter on my mother’s. Besides that, I appeared two months early—totally ruining my father’s golf plans that Sunday and probably many Sundays afterward. My family is Italian. With that comes a love for language and expression. My grandfather on my father’s side could be hyperbolic. He took one look through the nursery window and declared me an absolute beauty. Perfect in every way. Wasn’t I the most wonderful thing anyone had ever seen? My grandmother was more pragmatic. There were many…

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I have come to realize that there are individuals in this world who have a natural grace around people with disabilities. I am sure this partly comes from upbringing. Exposure brings a comfort level. Some people just get it. On this particular evening last year, I was feeling harried and cranky. It was show week. Late rehearsals. Homework fallen through the cracks. Children ejected daily out of bed operating on fewer than optimal hours of sleep. My children take part in a community theater program, and it is a tradition of the program that cast, crew and families go to…

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It’s astonishing how in one moment a lifetime of questions can flash through your mind. The instant I heard, “We suspect your baby may have Down syndrome,” these thoughts stampeded through my brain: Will she be happy? Will she have friends? Will she learn? What happens when she is an adult? Amanda is now 18 and has answered with a resounding “yes” to all except that last one. The last one still needs to be determined. For many years, adults with special needs were placed in institutions throughout New York. In the late 1970s and early 1980s the state began…

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I picked up the phone and heard, “Debbie, it’s your Uncle Lou. I wanted you to know I met the people who run David’s Refuge. You know them too, right? You and Brian should take a weekend and get away. This is for families like you!” Of course my Uncle Lou was absolutely right. Warren and Brenda Pfohl started David’s Refuge in 2012 in honor of their son David, who passed away after a 13-year battle with Batten disease. They understand the stress, exhaustion, isolation and fear that comes with caring for a child with a life-threatening medical condition and…

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Like it was yesterday, I recall pulling out the hand-me-down bunny costume from Amanda’s older cousin Donna. Pink and white, with little fluffy tail and foam head piece, I had saved it in the guest room closet just in case I had a baby girl who could wear it someday. We are all guilty. Dressing our babies in cute but ridiculous costumes and walking around the neighborhood gathering candy they cannot eat but we can. You hit a few houses. Everyone oohs and aahs over your cutie patooties and you go home with a stash of treats. Then the cutie…

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I walked home after waving goodbye to my daughter, Amanda, on her first day of kindergarten. I was thankful for the sunglasses that hid tears in my eyes. She was my first child and for the first time entering a world completely separate from me. Kindergarten: where each child is a shiny, clean slate on which teachers can write knowledge and experience. The tears in my eyes were partly for the loss of babyhood. For the sweet, cozy world that had been just ours. But the tears were also because I knew my child was not a clean slate. I…

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My kindergarten report card stated, “I am not sure little Debbie is aware she is talking half the time she is talking.” I naturally assumed the apple would not fall far from the tree and I would have talkative children. I daydreamed a parenthood experience with baby talk, sing song conversations and hilarious mimicry. But my first little apple was born with challenges that made it difficult for her to prattle away. Amanda was diagnosed with Down syndrome and airway issues at birth. She had multiple surgeries that damaged her vocal cords. A tracheostomy tube was placed before she was…

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My daughter was always drawn to the water, but for years and years she wasn’t allowed to get her head wet. When Amanda was 1 ½ years old she had a tracheostomy placed because of vocal cord damage from a surgery. This tube, located in her neck, gave her an airway to comfortably breathe, but it was also a direct path for water to reach her lungs if her neck was submerged. Simply put, she needed to stay out of water. That was easier said than done. We have a family camp on Lake Ontario. She had many friends with…

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Great teachers come in many varieties. But a quality they all share is the ability to recognize and bring out the best in their students, even students whose strengths are hidden. In this column, in honor of Teacher Appreciation Day, I wanted to talk about a teacher who has meant a lot to my son and other students at the Montessori School of Syracuse. Patricia Getz is the elementary music teacher and director of support services at the school. She is one of three women who started the Montessori Learning Center in 1995, which became the Montessori School of Syracuse…

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Students with special needs may not have conventional college aspirations, but they, too, get a taste of the anticipation, elation and devastation at this time of year as their typical classmates consider the next phase of their lives. High school hallways are abuzz as seniors rejoice over their college acceptance notifications. Parents of juniors are posting Facebook pictures of recruitment trips and campus tours. Guidance counselors are scheduling meetings to match students’ strengths and areas of interest with programs. By law, students receiving special education services are eligible to remain in school until the year they turn 21. This allows…

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